ADaPTS "(AD)olescents (P)ath through (T)ransplant (S)ickle cell disease"

Area of Science:

• Hematology
• Transplantation Medicine
• Adolescent Health

Background:

• Sickle cell disease (SCD) is a chronic inherited blood disorder impacting lifespan and quality of life (QoL).
• Hematopoietic cell transplantation (HCT) offers a curative option but carries risks.
• This study examines QoL changes in adolescents post-HCT for SCD.

Purpose of the Study:

• To explore the impact of nonmyeloablative matched sibling donor HCT on adolescent QoL.
• To assess changes in physical, social, and psychological domains post-transplant.

Main Methods:

• Multiple case study methodology with purposeful sampling.
• Data collected via QoL inventories, patient/parent/support interviews, and medical record analysis.
• Intra-case and cross-case synthesis, including time series and pattern matching analysis.

Main Results:

• Participants reported improved physical well-being, reduced pain, fatigue, and hospitalizations post-HCT.
• Socially, adolescents experienced increased acceptance, participation with peers, and improved social lives.
• Psychological outcomes were positive, with reduced stress and a more hopeful outlook on the future.

Conclusions:

• Adolescents with sickle cell disease undergoing HCT show enhanced QoL one year post-transplant.
• HCT positively impacts physical, social, and psychological well-being in this population.